Campaigning & Research
Campaigning for positive change
Listening to the needs of families, we work with national and local decision makers to ensure that children get the right equipment at the right time from statutory services. Our aim – to ensure that disabled children get the better future they deserve.
All children have the right to be safe and live without fear or pain. A right to learn, to develop skills, talents and abilities and a right to live a full life, without disadvantage.
Our 2018 #FixTheFour report set out our objectives across four points and included ending the use of ‘blanket bans’ and a “we don’t do” mind-set. Every local authority and health service must have an identified, transparent process for reviewing equipment requests. Where children do not meet the formal criteria, there must be a way for their request to be reviewed by clinical professionals and exceptionality determined.
A year ago, we exposed the impact that blanket ban policies have on children and families across the UK. From a Freedom of Information Act request, we identified 83% of councils in England were refusing to provide specialist car seats to disabled children.
Since the launch of #FixTheFour campaign in November 2018, we have been challenging councils across the UK that have blanket ban policies. To read the update click here.
#BLANKETBANS - COUNCILS THAT NOW PROVIDE CAR SEATS
Click on a campaign heading below to find out more:
Our week long exhibition at the House of Commons. Highlighting the crucial issues disabled and terminally ill children in the UK and their families face everyday.
SUCCESS! NEWLIFE CHANGED THE LAW!
SUCCESS! NEWLIFE CHANGED THE LAW!
The law in question is the ‘Use of Invalid Carriages’ section of the Road Traffic Act 1988. Until March 9 2015, disabled children and adults were not allowed by law to use wheelchairs over 150kgs in weight as they were classed as cars!
In effect, this restricted anyone who didn’t hold a driving licence from having the most modern, hi-tech wheelchair. Children with the highest levels of need were refused life-changing wheelchairs due to an antiquated law. As technology has advanced, so have wheelchairs and some now have a ‘sit to stand’ facility which not only has health benefits – to muscle tone, circulation, kidney and bladder function – but enables children and young people to socialise and be more independent. These wheelchairs help transform and extend lives and are used by those in most need. However, additional functions result in additional weight – and many of these wheelchairs are closer to 200kg. We met with the Department for Transport every six months over five years. The law had been in place for 25 years and any change can be a long process. Our dedicated campaign team, led by Newlife’s Clare Dangerfield together with local MP Aidan Burley, had frequent telephone conversations; we knew the government was committed to helping us resolve the problem; there was a ‘can do’ attitude towards positive change. We were asked to help rewrite the relevant part of the act and before long we received a call from the then Secretary of State for Transport Patrick McLoughlin giving us his support. Soon after, we got the good news that our campaign had been successful. This means a potential 70,000 additional children and young people now qualify for a hi-tech wheelchair. On the day of the change, DfT Minister Baroness Kramer presented the first of Newlife’s 150kg-plus wheelchairs.
IT'S NOT TOO MUCH TO ASK
IT’S NOT TOO MUCH TO ASK
Most people would assume that disabled and terminally ill children are provided with the essential equipment that they need, but we believe that for 1 in 3 children this is far from the reality.
Every day we hear from families whose children are sleeping on the floor because they don’t have a specialist bed to keep them safe, children who cannot go to school because they have been refused the wheelchair they need, children who are in pain and whose conditions are deteriorating because statutory services have run out of funds.
We even hear of children dying before their desperately needed equipment reaches them. We believe that disabled and terminally ill children having the right equipment at the right time it not too much to ask.